cerebal palsy

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LauraG
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Posted: Sun Jun 06, 2010 2:30 pm 
Post subject: cerebal palsy
does anyones child have cerebal palsy?

iv been told georgia had low muslce tone and sometimes they just suffer from muscle tone alone but sometimes it can be a sign of an underlying health probelm such as cerebal palsy?

what is the test to diagnose cerebal palsy? and if ur child has this how and wen did u find out?
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Kenty
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Posted: Sun Jun 06, 2010 3:03 pm 
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it is a long hard process to diagnose cerebral palsy

when we had lily-ann referred for her problems we were 99% sure it was cp...and told it was VERY highly likely it was

the test is an MRI scan...but there are times(it happens alot) where the child has it but the scan doesn't show it up Confused

we still have no firm diagnosis but all of her symptoms point to cp...we speak to a neurologist on 15th

be aware they if they think georgia has it she will be put through all kinds of tests Sad blood tests to look for genetic problems, wee tests for metabolics, mri to find out...they try to rule out everything before diagnosing cp
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LauraG
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Posted: Sun Jun 06, 2010 3:10 pm 
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thanks kenty.

cud i ask what symptoms lily-ann has?
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Kenty
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Posted: Sun Jun 06, 2010 6:40 pm 
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she cannot hold her head up for more than a few seconds when on her stomach
she cannot pull to sitting from laying,
she cannot crawl,
she cannot pull from sitting to standing,
she cannot change positions,
she cannot do most physical stuff babies do
she has a very strong preference for her left hand and leans to the right alot...rarely uses her right hand
she is behind in her speech
she cannot feed herself or give herself a drink
she has very low muscle tone in her trunk and right side

she can sit up and she can hold her weight on her legs...but in most respects she's a 6month old in an 19month olds body Crying or Very sad
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LauraG
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Posted: Tue Jun 08, 2010 9:53 am 
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she sounds just like georgia

she can only hold head for a few seconds whilst on her tummy
she cant sit up
cant bear weight on her legs only for 2 seconds
she leans to the right hand side and rarely uses her left hand.
georgia dusnt babble like babies usually do at her age.
georgia shows no signs in feeding herself or holding beaker or bottle.
and yes weve been told georgia has low muscle tone.
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simmysim
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Posted: Tue Jun 08, 2010 10:03 am 
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aww sorry to hear this Laura, they suspected Kieran of having CP but it has now been put down to Hydrocephalus. i also know of the worry you are going through, its scary!
they told me that he would have to first go for assessment by physio and then go to paediatrician for blood tests etc... as Kenty said!

My brother has CP and even though i was too young to remember any tests etc that he had to have, he is fine now, he could only use the left side of his body (if i remember rightly) but now you wouldnt know anythin was wrong, he walks with a bit of a limp, but thats it, i know he had to have lots of physio to get him there.

Kenty did you get the results of lily-anns MRI? last time i spoke to you you were waiting.xXx
LauraG
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Posted: Tue Jun 08, 2010 10:06 am 
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tahxn for ur post loolahoop.

i no it is scary u want to enjoy ur baby but theres always some worry and seems like u never have the answers.

cerebal palsy i actually in my family so dnt no if its genetic?

how did they decide kieran didnt have cp?

and kenty wen did lilly-ann sit up? and hols weight on her legs?
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simmysim
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Posted: Tue Jun 08, 2010 10:15 am 
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well to begin with it was because i took him to the doctor and said about his head being too big, and they wouldnt listen because it was still "on the chart" even though it is on the 91st percentile and his weight is on the 0.4th and his length is off the bottom Shocked but i kept on so they phoned the paediatrician, and he agreed with me, and his fontanelle is constantly bulging and he has "sunset eyes" and a very veiny head so they send him for urgent MRI which confirmed he had too much fluid, and no one has mentioned CP since then. he does still have appointment with Physio next week though.

i know exactly how you feel with the wanting to enjoy your baby but cant for worry!
i cant look at Kieran or play woith him without thinking "somethings not right" and i know that sounds awful but i cant help it! xXx
LauraG
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Posted: Tue Jun 08, 2010 12:27 pm 
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no it dont sounds awful i feel exactly the same i feel i cant enjoy georgia propery as im worrying something is not rite.

hv rung today shes not considered at all and didnt listen to my concerns at all and just kept saying she was premature and shell do these things soon.

but i really dont think the prematurity has anything to do with her being behind.

she sed she wont review her till 9 months!! so another 2 months of woryring and waiting.

well i hope in these 2 months she starts to do these things but i just dont think she will.
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simmysim
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Posted: Tue Jun 08, 2010 2:21 pm 
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that is terrible!! Mad
my HV was great, well sort of, i had been maoning about somethin not being right since he was 7 weeks, but theres not much a 7 week should be able to do anyway, so they took no notice, but then i kept on and on and i went to the docs, so they have made a referal for early years support, which is for Physio, occupational health (wotever that is), speech therapist and consultant paediatrician. and once they started listening to me it all moved quite quickly!

when do have your next appointment with physio? talk to them about your concerns, as they were the 1st people Kieran was refered to when my HV was concerned about CP.
has georgia ever been starved of oxygen at all? i dont really know too much about it, but my brother has CP because he had a difficult birth and was starved of oxygen for a while, also resulted in his twin dying, and they were concerned about Kieran having CP as he was v poorly when he was 7 weeks and had v low oxygen for a few days

xXx
LauraG
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Posted: Tue Jun 08, 2010 2:34 pm 
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next physio appointment is in 3 weeks so i will speak to physio bout my concerns.

ive been concerened something aint rite since about 8 weeks.

no she wasnt starved of oxygen. i was induced at 35+3 and monitored constantly. labour was very quick and she didnt need any help after birth onyl had to be in incubator couple of hours after to warm her up.

i no other things can cause cerebal palsy too not just oxygen. but others things like jaundice or sometime after birth they can have something go wrong inside.

i hope im just worrying over nothing but it just feels like im holding out for her to do these things she shoudl be able to do but actually there not happening.
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simmysim
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Posted: Tue Jun 08, 2010 2:46 pm 
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it is horrible thinkin there is something wrong with your baby though isnt it?
i felt like such a bad mum keep sayin i think theres something wrong with him, especially when every1 else is saying his fine!
but mummy's definitely know best!
xXx
LauraG
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Posted: Tue Jun 08, 2010 2:57 pm 
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yer i totally feel the same. everyones saying she will be fine and catch up and i cant help feeling bad for thinking theres something wrong.
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Kenty
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Posted: Tue Jun 08, 2010 6:58 pm 
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still no result, we speak to a neurolagist on 15th so i'm hoping they'll give us something...they have told us there are no clear signs of cp but it doesn't rule it out Confused


laura, lily-ann started sitting unaided about 8months but she would, and still does, fall back randomly so needs constant padding behind her
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simmysim
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Posted: Tue Jun 08, 2010 7:05 pm 
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thats a long time to wait for results kenty, must be so frustrating!!
Kieran had his MRI the week before last and then we had appointment with neurosurgeon the next day for results and he got check up again on 15th,was soo grateful they done it all so quickly.
is there anything they can do for CP?
my brother didnt have it too bad (i dont think) and he just had lots of physio
xXx
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